My 40 Year Waiting List For An Autism Diagnosis

Autism Plan My 40 Year Waiting List For An Autism Diagnosis

Why have I realised I’m autistic at 40 years old? To put it bluntly (which is one of my particular skills) no-one was looking. Autism didn’t really have a recognised diagnostic standard until the 1990’s when I was busy rocking out to Pearl Jam at upper school. And even then the tests were designed around boys because people didn’t see how girls are different. We are so much better at copying social behaviours to avoid standing out and, in my case, that was a survival strategy. I was horrendously bullied for being odd. But I couldn’t see the point of trying to fit in.

So at my new upper school I found the other ‘outcasts’ and we connected with a deep bond. I put my head down and studied because I knew it was one thing I could control. I was an artistic, colourful, model student. Never in trouble but always being told off for talking too much or staring out the window. Nice kids found my awkward jokes endearing so I also floated around the edge of a small group of girls who took me under their wing. But I didn’t seek people out, I was just as happy to be alone in my dream world, it’s more predictable and less ‘peopley’ there.

So why am I seeking a diagnosis for autism at 40? At a recent talk autistic writer Sarah Hendrickx summed it up perfectly; it’s because we are knackered! We’ve struggled all our lives, often at the expense of our mental health, but we just put our big girl pants and get on with it. But now, like many others, I can’t ignore it any longer.

After going through autism diagnosis with my three children, Lauren 18, James 12 and Emily 8, I began to learn about autism and open my eyes. The signs were always there, like:

  • Always being told I was too loud, too blunt, too chatty;
  • In hospital as a baby for refusing to feed (as did my son);
  • Sitting at the table pushing food around for hours;
  • Insomnia so bad that I could rely on it to complete homework;
  • In my own world, always singing to myself, dressing up and daydreaming;
  • Clumsily knocking things over and stimming (hand flaps, humming, fingernails, scratching)
  • Sensitive hearing and physical pain when seeing things I don’t like

Lots of things that made me uncomfortable I thought were normal for everyone. I didn’t realise how much I avoided eye contact until a clinician told me at my Autism Diagnostic Observation Schedule (ADOS) assessment. My trick is to look at the left eyebrow, but if you’ve got something in your teeth you can guarantee I’ll be staring at it until your surprised reaction makes me snap out of it.

When my children were being diagnosed I needed to reach out so I created a support group on Facebook called Autism Adventures – Minecraft and Meltdowns. I learned lots about autism and myself.

So after a lot of reading, online tests and procrastinating, I took up an offer of an ADOS from my friend Stephen Chandler at ChATS. Although the test is not ideal for adults it showed enough for Stephen to recommend I go to my GP for a full assessment. Autism is so criminally underfunded that I had to prove I was struggling enough to even ask for assessment and I’ve been warned there will be no support after. After more tests and a painful 2 hour interrogation I’m now on a year long waiting list for diagnosis.

I was relieved that professionals agreed with what I had suspected. I am happy to be me and now I forgive myself more. I am fulfilling a lifelong dream to be an illustrator by teaming up with author Deborah Brownson and I’m helping people every day in my support group and at Dimensions with our autism friendly work and by involving people with learning disabilities and/or autism. I’m larger than life and I love the colour yellow and sunshine. So people notice when the black dog comes to sit with me.

I had started to relive my whole life as if I’d just found out a huge twist at the end of the film and then watched it again with my new knowledge. I obsessed over every argument, mistake, relationship and decision in my life. I was upset that my past could have been different if we had known. But at the time autism was largely represented by the film, Rainman. I realised with sadness what my kids had been through. I felt really low for ages and withdrew from everything. But my supportive manager and loving family helped me bounce back.

Autism is just a different way of thinking and in my honest, bonkers household we believe the whole world would be a better place if we embrace neurodiversity.

My husband Oli and the kids have encouraged and lovingly heckled me all the way. My colleagues are so supportive I’ve been able to be open about the whole process. My close friends with autistic children smiled as if to say, “we were just waiting for you to work it out too!” I’ve also faced a lot of people telling me I don’t look autistic.

W ell, if you’re looking for Rainman you’ll never see the sunshine.

www.facebook.com/groups/AAMinecraftAndMeltdowns/

www.dimensions-uk.org/get-involved/autism-friendly/

chats-uk.com/

1 thought on “My 40 Year Waiting List For An Autism Diagnosis”

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    It took 54 years to find I was ASD only found out as both my kids are ASD youngest also ADHD and Dyspraxia

    Two years on am I a changed person …. hell no I’m me take me or walk away I’m not for changing

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